What is Celiac Disease and the Gluten-Free Diet?

Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, to no symptoms at all, and everything in between.

Caption: Image: CC—Ed Uthman

WHAT IS CELIAC DISEASE?
Celiac disease is an autoimmune condition that affects around 1.4% of the population (91.2 million people worldwide, and 3.9 million in the U.S.A.). People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.

Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.

Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms.

LESS OBVIOUS SYMPTOMS
Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.

CELIAC DISEASE VS. GLUTEN INTOLERANCE
Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity?

CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

No Hereditary Link in NCGS
Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary.

No Connection with Celiac-related Disorders
Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies.

No Immunological or Serological Markers
People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS.

Absence of Celiac Disease or Wheat Allergy
Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption.

WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS.

Crohn’s Disease and celiac disease share many common symptoms, though causes are different. In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.

Crohn’s treatment consists of changes to diet and possible surgery. Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.

CELIAC DISEASE DIAGNOSIS
Diagnosis of celiac disease can be difficult.

Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard.

But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result.

Currently, testing and biopsy still form the cornerstone of celiac diagnosis.

TESTING
There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.

BIOPSY
Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

WHY A GLUTEN-FREE DIET?
Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications.

A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.

For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.

WHAT ABOUT ENZYMES, VACCINES, ETC.?
There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.

There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet.

For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

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Keto? Would be a high fat, moderate protein low carb diet with no added sugars, starches, or sugary foods. Go look up stuff and recipes on Ketosummit, avoid anything with eggs, if it ask for cheese or milk substitute with dairy free versions. I can give you some dairy free, soy free, gluten free cheese brands that can work.

It would be a mostly meat and veggie based whole foods diet. I would suggest sheet pan and crockpot batches of chicken, beef, pork, roast in bulk then deviding up with different veggie dishes and spices each day to mix it up. Certain ingredients like spices and sauces would have to be sourced knowning brands. IE Stevia Sweet BBQ for BBQ, spicely organics or big axe spice company for spices, etc.

Might find you will need to supplement some things like vitamin C, calcium, magnesium, etc if your not going to be getting it from foods.

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Thank goodness for all the on going research. Majority of the population are still in the dark bout the symptoms of being a Celic or Gluten intolerance.

Eating out is still a problem for me, I live in the UK and although I must admit a number of eateries are getting the message, cross contamination is still rife.

The unfortunate thing is I am also allergic to rapeseed oil and aching joints, throwing up, reflux, feeling of weakness, sweating as well as loose stools occur. Sad thing is most of the gluten free products sold in UK contain rapeseed oil.

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Thanks for the help. I still don't know all the names of hidden gluten.

Modified food starch is one of the main culprits it contains wheat and also vegetable protein, make sure you can tolerate gluten-free oats not all of us can, I am a high sensitive celiac and um unable to tolerate any kind of oats even the gluten-free. Had celiac since 1989 and it's really "trial and error" keep track of what and where you eat and you will soon find food and restaurants you can go to without getting sick.

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Thank goodness for all the on going research. Majority of the population are still in the dark bout the symptoms of being a Celic or Gluten intolerance.

Eating out is still a problem for me, I live in the UK and although I must admit a number of eateries are getting the message, cross contamination is still rife.

The unfortunate thing is I am also allergic to rapeseed oil and aching joints, throwing up, reflux, feeling of weakness, sweating as well as loose stools occur. Sad thing is most of the gluten free products sold in UK contain rapeseed oil.

once again thank goodness for on going research.

Is this oil found in certain ethnic foods. I use it here to cut back on the smoke cos you can heat it up to higher heat than other oils is this why you use it. I don't recall seeing it in everyday general gluten-free foods

I am from UK go home every year and to be honest I much prefer the gluten-free products there you have more choices cos Celiac is more prevalent in the UK

My doctor here gave me a powder for these same types of symptoms called "Questran" mix it with juice and drink before I eat and it handles your symptoms but not sure about rapeseed oil. Lot of UK products contain canola and corn oil so look for products that contain these oils and not rapeseed.

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Keto? Would be a high fat, moderate protein low carb diet with no added sugars, starches, or sugary foods. Go look up stuff and recipes on Ketosummit, avoid anything with eggs, if it ask for cheese or milk substitute with dairy free versions. I can give you some dairy free, soy free, gluten free cheese brands that can work.

It would be a mostly meat and veggie based whole foods diet. I would suggest sheet pan and crockpot batches of chicken, beef, pork, roast in bulk then deviding up with different veggie dishes and spices each day to mix it up. Certain ingredients like spices and sauces would have to be sourced knowning brands. IE Stevia Sweet BBQ for BBQ, spicely organics or big axe spice company for spices, etc.

Might find you will need to supplement some things like vitamin C, calcium, magnesium, etc if your not going to be getting it from foods.

Just a suggestion there is a company called Primal Kitchen I get from Vitacost or Amazon but Amazon bit higher price wise, it's almost everything free and I wonder how their mayonnaise tastes as good as it does, also the chipotle lime mayo is fantastic made with avocado oil give it a try.

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Having had this disease since 1989 I have run the gamut on products and their tastes, as of today the best bread, bagels, muffins, cakes, pizzas, I get from UDI a lot of fast food restaurants etc here use their hamburger buns so I can have burgers, also their hot dog buns. Glutino has a bread called genius which is excellent. I eat a lot,of Mexican items too enchiladas with corn tortillas and the red sauce is fine, tacos are okay, no fried rice has veggie protein, Thai food has quite a lot of gluten-free ingredients. Watch for French fries in restaurants and fast food, a lot of the precut premade frozen fries are coated in beef broth to stop them from sticking together when deep frying and the broth has wheat in it, I learned hard way my grandson gave me some of his French fries from McDonalds a while,back and I got sick, I did research and McDonald's use this method also, and most of the preseasoned ff in restaurants they lightly toss in flour so when they fry them the seasoning stays on the ff. Hope this info is useful.

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Modified food starch is one of the main culprits it contains wheat and also vegetable protein, make sure you can tolerate gluten-free oats not all of us can, I am a high sensitive celiac and um unable to tolerate any kind of oats even the gluten-free. Had celiac since 1989 and it's really "trial and error" keep track of what and where you eat and you will soon find food and restaurants you can go to without getting sick.

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Just a suggestion there is a company called Primal Kitchen I get from Vitacost or Amazon but Amazon bit higher price wise, it's almost everything free and I wonder how their mayonnaise tastes as good as it does, also the chipotle lime mayo is fantastic made with avocado oil give it a try.

LOL Yeah they are the ONLY condiment I use, I also have a corn allergy, they are the only Paleo company that does not use corn starch, corn syrup or other things made from corn like citric acid or xantham gum. I wait til whole foods does the huge sale on them then stock like crazy. The mayo is great I use it for slaw sometimes, the ketchup and mustard are good to, I have to be careful with the dressings, the vinegar is apple cider but can cause delayed gastric emptying. I also use their collogen fuel powder.

About Me

In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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This article appeared in the Spring 2005 edition of Celiac.coms Scott-Free Newsletter. Celiac.com 04/10/2005 - Celiac disease is, by definition, a condition in which the intestinal wall is damaged as a result of eating gluten. It is a chronic illness in which the symptoms wax and wane1 for reasons that are not yet understood. Celiac disease is the result of genetic and environmental factors. We now know two HLA markers (DQ2 and DQ8) for the predisposition for celiac disease2. One environmental factor is, of course, the consumption of gluten, but there may be other environmental contributors. Recent research reveals that about 1% of the population suffers from this condition3 although most remain undiagnosed. On the other hand, gluten sensitivity is characterized by antigliadin antibodies. This condition afflicts at least 12% of the general population4 and is found in patients with a wide variety of autoimmune diseases. In some studies of neurological diseases of unknown origin, a majority of patients show signs of gluten sensitivity4. These patients are mounting an immune response to the most common food in the western diet, yet many practitioners consider gluten sensitivity to be a non-specific finding, frequently counseling patients to ignore these test results. This is particularly unfortunate since a strict gluten-free diet has repeatedly proven helpful to patients who are fortunate enough to consult a practitioner who is versed in gluten sensitivity and its connection with autoimmunity. Untreated celiac disease carries an added risk for a wide variety of additional autoimmune diseases. The most likely cause of this predisposition to additional autoimmune disease is a condition sometimes referred to as leaky gut syndrome. We know that gluten causes intestinal damage. We also know that this damage allows large undigested and partly digested proteins to leak into the bloodstream through the damaged intestinal wall. This leakage results in immune system production of antibodies to attack these foreign proteins as if they were invading microbes. The result is the production of a huge variety of selective antibodies, and each type recognizes a particular short chain of amino acids located somewhere in the proteins structure. Unfortunately, our own tissues can contain very similar or identical sequences of amino acids. Hence, by a process called molecular mimicry, we are producing antibodies that attack both the foreign food proteins that are leaked into our blood through the damaged intestinal wall, and similar amino acid sequences in our own tissues, often resulting in an autoimmune disease5. The supposedly non-specific antigliadin antibodies in gluten sensitivity provide two important pieces of information: 1) That the intestinal wall has been damaged and is permitting leakage of food proteins into the bloodstream, and; 2) That the dynamic contributing to increased autoimmunity in celiac disease may well be an important contributing factor in gluten sensitivity5. The currently common view that celiac disease is a serious illness, while disregarding gluten sensitivity, is dangerous to gluten sensitive patients. This bias is also a divisive element in the gluten-sensitive/celiac community. Whether a person has "biopsy proven" damage to the intestinal wall, if this person gets sick from eating gluten, or mounts an immune response to gluten, we are all in the same leaky boat (please pardon the pun). We need to work together to get a better understanding of gluten sensitivity in all its forms (including celiac disease). As a community, we need to discourage any kind of dismissal of illnesses that are partly or wholly mediated by gluten. If we can stand together in our quest for widespread recognition of the damaging impact of gluten consumption, we can all enjoy a healthier life. Our descendants will also inherit a more gluten-savvy world. Ron Hoggan is an author, teacher and diagnosed celiac who lives in Canada. His book "Dangerous Grains" can be ordered at Celiac.com. Rons Web page is: www.DangerousGrains.com Sources: Cooke W, Holmes G. Coeliac Disease. Churchill Livingstone, New York, N.Y. 1984. Fasano A. Celiac disease--how to handle a clinical chameleon. N Engl J Med. 2003 Jun 19;348(25):2568-70. Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, Elitsur Y, Green PH, Guandalini S, Hill ID, Pietzak M, Ventura A, Thorpe M, Kryszak D, Fornaroli F, Wasserman SS, Murray JA, Horvath K. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med. 2003 Feb 10;163(3):286-92. Hadjivassiliou M, Grunewald RA, Davies-Jones GA. Gluten sensitivity as a neurological illness. J Neurol Neurosurg Psychiatry. 2002 May;72(5):560-3. Braly J, Hoggan R.. Dangerous Grains, Penguin-Putnam-Avery, New York, N.Y., 2002.

Celiac.com 03/21/2007 - Celiac disease is an inherited autoimmune disorder marked by an inflammatory condition in the small intestine that triggers when genetically susceptible individuals consume wheat. Symptoms of celiac most commonly begin around age two, after wheat has been introduced into the diet, or in the third and fourth decades of adult life. In genetically susceptible people, the ingestion of wheat gluten protein triggers an inflammatory reaction in the small bowel that causes a collapse of the villi, the small finger-like projections responsible for nutrient absorption. This greatly reduces the amount of surface area available for nutrient, fluid and electrolyte absorption. The extent of this intestinal damage generally correlates to the severity of the symptoms. Celiac generally presents gastrointestinal and other symptoms including: abdominal cramps; gas and bloating; diarrhea; fatigue or general weakness; foul-smelling or grayish stools that are often fatty or oily; Osteoporosis; stunted growth in children; weight loss, however many individuals have little or no symptoms at all. Celiac disease can also occur in asymptomatic individuals who have associated conditions. Recent studies show the prevalence of celiac in children under 15 years in the general population to be 3 to 13 per 1,000 children, or approximately 1:300 to 1:80 children. A figure of 1 in 133 people is commonly used as an average for rates of celiac disease in the general population. Celiac Disease Diagnosis Celiac disease can be challenging to diagnose, because its symptoms are often similar to those of other diseases. Celiac disease is easily taken for other diseases such as Crohns disease, chronic fatigue syndrome, diverticulitis, various intestinal infections, irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss. Thus, celiac disease is often misdiagnosed, and greatly under-diagnosed. Celiac practice guidelines call for routine screening of anyone with a family history of celiac disease or of disorders such as thyroid disease, anemia of unknown cause, type 1 diabetes or other immune disorders or Downs syndrome. Otherwise, patients are generally screened case by case according to individual symptoms. Considerations for Celiac Disease As a general practice, celiac disease should be considered in the earliest stages of differential diagnosis of children with persistent diarrhea, especially with failure to thrive. Celiac disease should also be considered in the differential diagnosis of children with persistent GI symptoms, including recurrent abdominal pain, constipation and vomiting, and any other GI issues commonly associated with celiac disease. Testing is recommended for children with celiac-associated non-gastrointestinal symptoms, such as delayed puberty, dental enamel hypoplasia of permanent teeth, dermatitis herpetiformis, iron-deficient anemia resistant to oral iron, osteoporosis, and short stature. Testing is also recommended for asymptomatic children whose relatives have celiac, and those who have celiac-associated conditions, such as autoimmune thyroiditis, Down syndrome, selective IgA deficiency, Turner syndrome, type 1 diabetes mellitus, or Williams syndrome. Celiac practice guidelines call for testing asymptomatic children who belong to at-risk groups at around 3 years of age, as long as they have eaten gluten regularly for at least 1 year before testing. First-degree relatives of individuals with celiac disease may or may not manifest symptoms of the disease. Predisposition to gluten sensitivity has been mapped to the major histocompatibility (MHC) D region on chromosome 6. The most important HLA haplotype is DQw2, which is often in linkage with DR3. Other important HLA haplotypes identified are DR7 and DPB 1, 3, 4.1 and 4.2. The sites on these MHC class 2 expressed proteins responsible for interacting with gliadin and host T cell receptors thereby sensitizing the intestine to gluten have not been identified. Therefore, guidelines call for regular testing of asymptomatic individuals with negative serological tests, and who belong to at-risk groups. Treatment guidelines do not presently call for routinely testing autistic children for celiac disease, as there is no evidence that celiac is more in autistic children than in the general population. Celiac Disease Testing There is currently no test for diagnosing celiac disease with 100% certainty. For most people, the disappearance of symptoms, and/or the appearance of a "normal" biopsy following the adoption of a gluten-free diet provide the strongest evidence for celiac disease or gluten intolerance. A blood test, such as anti-tissue transglutaminase and anti-endomysial antibodies, can detect abnormally levels of antibodies, and is often used in the initial detection of celiac in people who are most likely to have the disease, and for those who may need further testing. Based on the current evidence and practical considerations, including accuracy, reliability, and cost, measurement of IgA antibody to human recombinant tissue transglutaminase (TTG) is recommended for initial testing for celiac disease. Although as accurate as TTG, measurement of IgA antibody to endomysium (EMA) is observer dependent and therefore more subject to interpretation error and added cost. Because of the inferior accuracy of the antigliadin antibody tests (AGA), the use of AGA IgA and AGA IgG tests alone is no longer recommended for detecting celiac disease. Several serological markers are useful in diagnosing celiac disease. The first of these is IgG class antigliadin antibody (AGA). This antibody is sensitive to gluten, but it is also found in other diseases and thus is not a good a specific indicator of celiac. Generally, IgA class AGA is more specific, but about 2% of celiac patients show selective IgA deficiency, and thus show negative results, even though they have celiac. A positive IgG and IgA AGA gives a reported sensitivity of 96% to100% and specificity of 96% to 97%. Recent studies show Anti-reticulin antibodies (ARA) in people with celiac disease, but these appear to be nonspecific. In fact, taken alone, IgG ARA is largely ineffective. However, IgA ARA has sensitivity of 97% and a specificity of 98% in adults. These figures are much lower in children. IgA class anti-endomysial antibody (EMA) and human jejunal antibody (JAB) have recently been identified as both sensitive and specific for celiac disease. The antibody EMA, which reacts against endomysium reticulin fibers, has been found only in people with active celiac and not other diseases. As EMAs are associated with other diseases in children, they are a less accurate indicator of celiac in children than in adults. Studies in children less than 2 years old with celiac disease have shown a steep fall in EMA sensitivity, so EMA appears even less useful than in children over 2 years of age. Finally, since the EMA and JAB antibody tests may be negative in adults with celiac disease and IgA deficiency, they cannot be considered definitive for diagnosis of celiac disease. A complete panel of antibody tests seems to be most accurate method of diagnosing celiac disease. Taken together, a positive panel of IgG AGA, IgA AGA and EMA can predict the presence of celiac disease in 99.3% of patients. A negative panel of IgG AGA, IgA AGA and EMA can predict the absence of celiac in 99.6% of patients. These antibodies tend to diminish or disappear when individuals maintain a gluten-free diet. More than 90% of patients with celiac disease have genetic markers HLA DQalpha *0501, and HLA DQbeta *0201. Negative tests for these markers in conjunction with negative serum antibody tests suggest an absence of celiac disease. However, positive tests for the genetic markers do not necessarily mean that the patient has celiac disease. In conclusion, genetic markers can be used as a test to exclude celiac disease as a diagnosis. Celiac Disease Biopsy A diagnosis of celiac disease is generally confirmed through a biopsy, by looking for celiac associated damage to the small intestine. One important fact is that intestinal biopsies are regularly obtained endoscopically from the duodenum and therefore provide no information regarding the extent of disease along the jejunum. Flattening of the villi usually occurs first, and most severely, in the duodenum, as it the duodenum is the first part of the intestine to be exposed to gluten. Conversely, the villi of the jejunum, which receives much less exposure, are often asymptomatic, and nearly normal. In most of these individuals, treatment with a gluten-free diet results in the return of all villous and crypt structures to normal or near normal. Certain conditions, especially infection, can yield intestinal biopsy results that are similar to those of celiac disease, and it is important to consider and/or exclude these conditions when celiac disease is suspected. Practice Guidelines for Treatment of Celiac Disease with an Aggressive Life-long Gluten-free Diet As there is presently no cure for celiac disease, avoiding gluten is crucial. Practice guidelines call for a life-long gluten-free diet as the standard treatment for celiac disease. To manage the disease and prevent complications, its essential that patients avoid all foods that contain gluten. That means it is crucial for the patient to avoid all foods made with wheat, rye, or barley. This includes types of wheat like durum, farina, graham flour, and semolina. Also, bulgur, kamut, kasha, matzo meal, spelt and triticale. Examples of products that commonly contain these include breads, breading, batter, cereals, cooking and baking mixes, pasta, crackers, cookies, cakes, pies and gravies, among others. It is also good practice for patients to avoid oats, at least during initial treatment stages, as the effects of oats on celiac patients are not fully understood, and contamination with wheat in processing is common. So, its a good practice when first adopting a gluten-free diet to eliminate oats, at least until symptoms subside, and their reintroduction into the diet can be fairly monitored and evaluated. Another good practice is coaching celiac patients to avoid processed foods that may contain hidden gluten. Wheat flour is commonly used in many processed foods that one might never suspect. A few examples include candy bars, canned soup, canned meat, energy bars, ketchup, ice cream, instant coffee, lunchmeat, mustard, pastas, processed meat, sausages, and yogurt. Also, gluten is also commonly found in many vitamins and cosmetics, such as lipstick, and in the production of many capsules and tablets, where wheat starch is a commonly used binding agent. Obviously, patients must avoid beer made with barley or wheat (there are gluten-free beers), though wine, brandy, whiskey and other non-wheat or non-barley alcohols are okay. Encourage patients to eat a diet rich in fish, fresh meats, rice, corn, soybean, potato, poultry, fruits and vegetables. Patients should also avoid milk and other dairy products, as it is common for patients with celiac disease to be lactose intolerant. Dairy products can often be slowly reintroduced into the diet over time with successful treatment. It is also important for patients to learn to identify gluten-free foods. Because a gluten-free diet needs to be strictly followed, and because food ingredients may vary from place to place and even over time for a given product, it is important to always read the label. For lists of gluten-free foods and products, and for specific advice on adopting, shaping and maintaining the gluten-free diet that is right for them, patients may wish to consult a registered dietitian who is experienced in teaching the gluten-free diet. Most patients who remove gluten from their diets find that their symptoms improve as inflammation of the small intestine begins to subside, usually within several weeks. Many patients who adopt a gluten-free diet report an improvement within 48 hours. Results of a gluten-free diet can be especially dramatic in children with celiac disease. Not only does their diarrhea and abdominal distress usually subside but, frequently, their behavior and growth rate are often markedly improved. A reappearance of intestinal villi nearly always follows an improvement in symptoms. In younger people, the villi may complete healing and re-growth in several months, while in older people, the process may take as long as two to three years. In cases where nutritional deficiencies are severe, celiac patients may require vitamin and mineral supplements to help bring about a healthier vitamin profile: folic acid and B12 for patients with anemia due to folate or B12 deficiency; vitamin K for patients with an abnormal ProTime; calcium and vitamin D supplements for patients with low blood calcium levels or with osteoporosis. For all such cases, individuals should consult their health professional. Skin lesions common in patients with dermatitis herpetiformis often improve with adherence to a gluten-free diet. The Importance of Follow-up Testing for Celiac Patients on a Gluten-free Diet Research indicates that only half of those patients who have had celiac disease for at least 20 years were following a strict gluten-free diet. Up to 30% of those patients showed evidence of bone loss and iron deficiency. These are but a few of the long-term consequences for celiac patients failing to follow a gluten-free diet. Thus, it is important to conduct follow-up testing of celiac patients to determine the success of their gluten-free diets, and the progress of their treatment, and to make any necessary adjustments to each. Even done properly, with no accidental consumption of gluten, the elimination of gluten antibodies from the blood takes months. To estimate the treatments effectiveness, current guidelines call for a single serological testing after 3-6 months on a gluten-free diet. For patients who are free of antibodies, and actively following a gluten-free diet, it is wise to consult a doctor if there is any recurrence of celiac-associated symptoms. First-degree relatives of celiac patients should have a repeat blood test every 2-3 years. health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.

Celiac.com 03/26/2007 - Ongoing digestive symptoms and other systemic problems for individuals with Celiac Disease who are on a gluten free diet are fairly common. While Celiac Disease itself is becoming more widely recognized, its effects on multiple parts of the body and its ongoing symptoms remain more obscure. While this article is not meant to provide medical advice, it is intended to provide a summary of possible causes that you and your health care provider may want to explore further. Celiac Disease Follow Up Treatment After a diagnosis of Celiac Disease is made, additional follow up tests are recommended immediately after diagnosis and on an ongoing basis. These include: Blood work for vitamin and mineral deficiencies Thyroid Screen (note: Patients on thyroid replacement and other medications may need frequent Monitoring for dosage adjustment as their absorption improves.) Bone density scan Liver enzymes Research from Stanford University School of Medicines Celiac Management Clinic is noting continued absorption problems with many individuals who are on a gluten free diet. A 72 hour quantitative fecal fat test and a 25-gram xylose sugar absorption test can help diagnose continued absorption problems. Healing progress on the gluten-free diet may be monitored by re-testing whichever diagnostic blood test was initially highest, at an interval of 6 - 12 months. Children are likely to heal within a few months; adults may take a few years, and some may never totally heal. Note: Calcium and Iron status will improve in most individuals even without supplements once the intestine heals. Several doctors recommend NOT prescribing drugs such as Fosamax and Evista until after the intestine heals and more calcium is being absorbed from the diet. Celiac Disease and Ongoing Symptoms After a Gluten-Free Diet Most individuals will experience a significant decrease of symptoms within a few weeks or months of starting a gluten free diet. However, some individuals may continue to experience significant digestive problems or may have a relapse of symptoms. Some possible explanations are summarized below: Hidden Gluten Exposure Look for any possible sources of gluten exposure. Binders in medication, cross contamination, misunderstanding of the strictness required of the diet, etc. should be explored. Repeat blood tests might give an indication of continued gluten exposure; however these may not be sensitive enough to note low level exposure. Lactose Intolerance Especially during the healing phase of celiac disease, intolerance to lactose, a protein found in dairy products, may be seen. Enzymes needed to digest lactose are manufactured by the intestinal villi, which have been damaged by exposure to gluten. Often once the villi have regrown, symptoms of lactose intolerance will subside. Testing includes Lactose H2 breath testing. Suggested treatment includes using an over-the-counter lactose enzyme when ingesting dairy products. Re-colonizing the small intestine with beneficial bacteria (see probiotics, below) is also recommended. Helicobacter Pylori A study by Villanacci, et. al, published 8/28/2006 in the American Journal of Gastroenterology noted that 44% of individuals diagnosed with celiac disease tested positive for Helicobacter Pylori at the time of, or within 1 year of their celiac disease diagnosis. Small Bowel Bacterial Overgrowth In a report published in the American Journal of Gastroenterology, Vol. 98, No. 4, 2003 of 15 persons with continuing symptoms, 10 showed evidence of overgrowth of bacteria within the small bowel. Testing included Lactulose H2 breath testing. Suggested treatment includes the non-systemic, prescription antibiotic, Rifaximin (800 mg. per day for one week). Note that the antibiotic used is called Rifaximin in England and Xifaxam in the U.S. Digestive function should also be evaluated as the underlying cause of SBBO. Yeast Overgrowth Some individuals report continuing symptoms due to overgrowth of yeast. Testing includes blood antibody testing for Candida. Suggested treatment includes ½ tsp Nystatin powder (mix with water), twice a day and 200 mg Ketoconizole once per day for 2-3 months. Monthly liver function testing during treatment is recommended. Nystatin powder may be ordered, by prescription, through pharmacies which offer custom compounding of medications. Digestive function should also be evaluated as the underlying cause of yeast overgrowth. Dietary changes may also be considered. Other Food Sensitivities Additional IgG food sensitivities may be seen. An IgG sensitivity is different from the IgE allergies most allergy doctors check for. Common food sensitivities include dairy casein, corn, soy and eggs. Treatment includes avoiding the food, and food rotation. There are some reports of a reduction of food sensitivities when digestive function improves. Digestive Function Multiple problems with digestive function may be found. A complete evaluation should be done. One source for a comprehensive stool analysis may be obtained, by mail and by prescription. Intestinal Motility Increased intestinal motility may contribute to continuing diarrhea. Try reducing motility by using a fiber supplement like Benefiber or Citracel. Particularly in individuals who have had their gall bladder removed, consider Cholestid, a prescription drug used for lowering cholesterol, which may also slow motility. It acts by binding to irritating bile salts. Decreased Stomach Acid Low stomach acid (hypochlohydria) may interfere with the effectiveness of ones own digestive enzymes and may create an environment that encourages yeast or bacterial overgrowth. Additional information may be found in the book "Why Stomach Acid is Good for You" by Wright & Lenard. Testing may be done using the Heidleberg Capsule or Gastrocap tests. Supplemental Betaine HCl, bitters, digestive enzymes and probiotics, available at a health food store, may be helpful. Beneficial Bacteria Probiotics are very helpful for regaining the balance of the intestinal flora. Use ones that have multiple kinds of bacteria. The ones found in the refrigerated section of health food stores will have the highest level of bacteria. Kefir, raw kimchee and raw sauerkraut, also found in the refrigerated section, have high levels of active cultures. Digestive Enzymes Pancreatic enzymes assist with more complete digestion, discouraging unhealthy bacterial growth. Recommendations have been made for the vegetable based enzymes Which may be ordered through the internet or found in health food stores. Animal derived enzymes are available by prescription. Experiment to see what works best. To avoid heartburn, start by sprinkling ½ of a capsule on food & increase as needed and tolerated. Be sure to carefully check the Gluten-Free status of all enzymes. It is common for the Maltase to be made from barley. Carbohydrate intolerance Some individuals do not digest carbohydrates and sugars well. The undigested carbohydrates encourage the growth of harmful yeasts and bacteria. More information on a diet low in carbohydrates may be found in the book "Breaking the Vicious Cycle" by Gottschall. She recommends eliminating all complex carbohydrates to kill off the bad bacteria. Parasites and other bacterial problems Check for parasites and other bacterial problems, including Giardia lamblia and Ascaris lumbricoides. Just because an individual has celiac disease, doesnt mean they cant have the bugs that a normal person with diarrhea may have! Other Autoimmune Diseases At least 1/3 of the people diagnosed with celiac disease as adults will also have another autoimmune disease. Many report a significant improvement in their other autoimmune disease after beginning a gluten free diet. However, some individuals with celiac disease may develop other autoimmune diseases even after beginning a gluten free diet. Watch for Type 1 diabetes, liver, thyroid, pancreas and adrenal diseases, peripheral and central nervous system damage, connective tissue and other rheumatoid inflammations. Ms. Anderies also serves as a member of the Denver Metro Chapter of CSA/USA Medical Education Committee

Celiac.com 08/12/2018 - Receiving a celiac disease diagnosis or being told you need to be on a gluten-free diet can be an overwhelming experience, and it is certainly not for the faint of heart. Most people get frustrated with the transition, and many don't know where to begin. While eating gluten-free can improve your health, I must emphasize that it is not recommended to attempt a gluten-free diet without a doctors supervision, as there are many potential health risks involved with making drastic changes to your diet, which can be avoided with assistance of a qualified doctor and/or nutritionist. If you suspect gluten-intolerance to be the culprit for your health problems, get examined by a doctor and get tested for celiac disease before initiating a gluten-free diet. It is very important to continually consume gluten while you are undergoing testing for celiac disease because many of the tests require you to be consuming gluten to get accurate results.
Prescription: A Gluten-Free Diet
Now that you have your diagnosis and need to eliminate gluten, you can make the transition to a gluten-free diet with confidence. The following information is a guideline of what you will need to know to get started. I must emphasize that this is only a guideline, and you will need to do your own research and consult with your doctor for more detailed information on a gluten-free diet. It is also a great idea to get involved in local support groups. Support groups will have members that understand what you are going through and they can help direct you to beneficial resources:
Celiac Disease Support Groups, Organizations & Contacts
Create New Habits
To begin, if you are accustomed to doing things your own way, you will have to throw out many of your old habits. To avoid gluten poisoning you must keep all gluten away from your mouth. You will need to evaluate everything you ingest very carefully. Gluten can come in a variety of unexpected ways, including a kiss from a loved one, and any gluten that comes into contact with your mouth is a potential source of contamination. Cross-contamination can occur when a meal is prepared on cooking equipment shared with gluten-containing foods. It can also come from touching anything that has come into contact with gluten. It is therefore important to gluten-proof your house and to keep everything you eat separate from gluten and gluten residue. If you eat at restaurants, it is important to only eat at places that you know are safe. To help you avoid accidental gluten ingestion, please follow your instincts and use the following guidelines and avoid potential health hazards. Please remember that these are only guidelines--if you still have questions, please consult with a medical professional.
What does "Gluten-Free" Actually Mean?
Since gluten is found in wheat, rye and barley, it is obvious that you will need to avoid these grains. Less obvious however, are the myriad of products that contain gluten as a hidden ingredient. The Food and Drug Administration (FDA) recently regulated the use of "gluten-free" on a food label, and there was already an FDA regulation that requires manufacturers to declare wheat if it is used as an ingredient in a product. Products that don't use "gluten-free" on their label unfortunately don't have to disclose ingredients that are made from barley or rye, which requires you to learn to read and understand ingredient labels. Many additives, natural or artificial, can contain gluten. Sometimes companies label products as "gluten-free" or the ingredients are naturally gluten-free, but the product may have be contaminated if it was manufactured on shared equipment. You will have to decide if you want to include such products in your diet. It is also important to remember, for reasons just mentioned, that “wheat-free” does not mean “gluten-free.”
Batch Testing:
According to current FDA proposals, products testing at less than 20 parts per million (PPM) for gluten will likely be allowed to be labeled "gluten-free," and, according to them, are considered safe for people with gluten-intolerance or celiac disease. There are several organizations that offer gluten-free certification for companies who follow their guidelines and batch test their products. Check out the link below for more information on gluten-free certification and labeling.
Gluten-Free Food Certification Program by the Gluten Intolerance Group
Gluten-Free Shopping
Shopping will likely take much longer for you than it used to. Don't rush. It is important to read all ingredients carefully. If you are in a hurry, you run the risk of overlooking a key ingredient that might contain gluten. I find it helpful to plan my meals in advance. There is nothing worse than coming home from work hungry and realizing that you have nothing to eat (and it isn't like you can go to the first drive-thru you find). So planning my meals on the weekend and doing my shopping in advance, cuts my stress level down considerably and keeps me from going hungry. Check your products against your gluten-free guidebooks, and contact the manufacturer if you are unsure about something. The following links will help you take the guess work out of shopping for gluten-free products:
Safe Gluten-Free Food List (Safe Ingredients)
Unsafe Gluten-Free Food List (Unsafe Ingredients)
As mentioned, there are also many products that are naturally gluten-free that are not labeled "gluten-free," and there are some very helpful books that can help you find these foods when you are shopping.
A Gluten-Free Kitchen
A gluten-free kitchen is very important. If you can have an entirely gluten-free kitchen, that is ideal, but it may not be an option for many households. Therefore it is especially important to keep your house clean and free of gluten contaminates. It is also important to dedicate special kitchen supplies for gluten-free cooking. I bought a new cutting board that is dedicated only to gluten-free cooking. You may also want to have separate kitchen utensils such as sponges, toasters (a dedicated gluten-free toaster is highly recommended), sifters, bread machines, etc. This is especially important if you use utensils that are made of wood, plastic, or other porous materials that could harbor gluten and possibly contaminate your gluten-free food. If possible use an electric dishwasher to clean your dishes.
If everyone in your household is going gluten-free it is important to clean out and empty all of the gluten products from your kitchen. If you share a kitchen with gluten eating family members, it is a good idea to store their food products separately from your gluten-free products, and to clean off all surfaces before you prepare your gluten-free food. Dedicating gluten-free cupboards and refrigerator shelves is a great way to start.
Here are some important links that will help you cook gluten-free meals with ease:
Gluten-Free Cooking
Gluten-Free Recipes
Kitchen Checklist - Possible Sources of Contamination:
Bread-machine
Toaster
Sponges & cleaning pads
All kitchen supplies & utensils
Colanders
Cutting boards
Door handles
Soaps
For more information on maintaining a safe kitchen environment, click the link below:
What You Need If You Can't Have A Gluten-Free Kitchen
Dining Out Gluten-Free
Dining out presents a challenge for most people on a gluten-free diet. Depending on your level of sensitivities, you may have difficulty eating out at all. Even if the restaurant offers a gluten-free menu, it is always important to find out what safety precautions the restaurant uses to avoid cross-contamination, and to make sure all the ingredients in your food are gluten-free. This may require you to modify your order, and also may mean talking with the chef about their kitchen practices. You may also benefit from utilizing a guide to safe restaurants.
Here is an additional article that may be helpful to your situation:
Take Charge of Your Meal When Eating Out
A Gluten-Free Bathroom
Believe it or not, your bathroom is another place where you might be getting sick from gluten contamination, and not even know it. There are many products in your bathroom to watch out for as many body products contain wheat and/or hidden gluten ingredients. Most celiacs can use body products without a negative reaction, though some people experience rashes and other unsavory reactions from gluten body products. However, if you are using face or body products that contain gluten, it is very important not to ingest them. I find it difficult to avoid getting shampoo or makeup near my mouth, so I don't take any chances. I use gluten-free soap, shampoo, conditioner, face-cleaner, toner, make-up, toothpaste; basically nothing goes onto my body that contains gluten. Using gluten-free body products allows me the freedom to worry less about accidental contamination, and gives me more time to enjoy my life. Many gluten-free body products are not labeled gluten-free, so it is important to read ingredient labels carefully and check with the manufacturer if necessary.
Bathroom Checklist:
Toothpaste
Shampoo/conditioner
Make-up
Lip-stick, lip-liner, lip-gloss, cosmetics, etc.
Lotion
Sunscreen
Gluten-Free Medications (Prescriptions and Supplements)
Most people with celiac disease or gluten-intolerance also suffer from malabsorption and sometimes malnutrition. Your doctor may prescribe pain, anti-inflammatory, digestive or other medications or supplements to help assist with your recovery. It is very important to note that some medications and supplements can contain gluten. Do not assume that just because your doctor knows you have celiac disease or gluten intolerance that the medications or supplements they may prescribe for you are gluten-free. Be your own advocate and read the ingredients and contact your pharmacist and/or the manufacturer and find out if your prescriptions, vitamins and supplements are gluten-free.
Gluten-Free Medications List
Additional Concerns
Children with Celiac Disease
Raising children with celiac disease or gluten-intolerance is no easy feat. Your kids will have to deal with immense peer pressure and there will be a great deal of temptation for them to eat gluten-containing foods. Talk to the staff at their school and help them to understand your child's special needs. The more support you have, the better off your child will be. There are many support groups that advocate for children with celiac disease, and it is important to get involved and learn everything you can to help support your child.
Raising our Celiac Kids (R.O.C.K) Support Group
Pets
Your pets present another source of potential contamination, especially if you have pets like mine that love to smother you with unexpected kisses, sometimes on the mouth. What your pet eats can affect you too. Handling your pet's food, cleaning your pet's dishes and having young celiac children in a house where they may eat dog or cat food are all legitimate concerns. I decided to switch my pets to gluten-free pet food. Most pet food is not labeled gluten-free, so it is important to read ingredients carefully. I found grain-free, all natural pet food to be a great alternative to gluten-containing pet foods, that way I don't have to worry about accidental contamination or getting kisses from my pets--and it's healthier for them too! It is also important to check all other pet products that you come into contact with for hidden gluten ingredients, like shampoos and soaps. It is of course always important to talk to your veterinarian before making any dietary changes for your pet.
Other Food Sensitivities
Most people who begin a gluten-free diet experience almost immediate relief from their symptoms. However, many people experience gluten-like reactions to other foods, and often suspect that their food was contaminated by gluten. As it turns out, many people who experience such reactions may in fact have additional food sensitivities. Some of the most common food sensitivities include, dairy/casein, soy, corn, sugar, nuts, shell-fish and processed or fatty foods. While many people report that they are able to add these foods back into their diet after they have established a gluten-free diet for many months, and after their intestines have had time to heal, it is up to you and your doctor or nutritionist to determine which foods may be causing you trouble. The 'elimination diet' is often recommended for determining what additional food sensitivities you may have. Ask your doctor if the elimination diet is right for you.
Food Diary
It is important to keep a food diary, especially when first initiating a gluten-free diet. Making notes of the foods you eat and the reactions you have to the foods you eat, and how you feel that day, can give you more insight as to which foods are hurting you and which foods your body can easily digest.
Final Thoughts
Be Picky
Having a gluten intolerance means taking pride in your body, but not being too proud to say, "no, thank you." Don't worry about appearing too picky to others, you simply can't take care of yourself and worry what others think of you at the same time. You have the right to eat what you want; if something doesn't look, smell or taste right to you, or if you just don't feel right about eating something, don't eat it! It is better to come across as too finicky, than to spend the night in the bathroom or worse yet, the emergency room. Everyone has a different level of gluten sensitivity and you will have to find out through trial and error what works best for you.
Be Prepared
As a former Boy-Scout, my high-school teacher used to always say, "Be prepared". I cannot emphasize enough the importance of this statement. It is important to be prepared and think ahead. Keep gluten-free snacks on hand at all times, because you never know when you are going to get hungry somewhere that doesn't offer gluten-free food. Keep shelf-stable snacks in your car, office, purse, and anywhere you spend time. It is better to have gluten-free snacks on hand, then to get hungry and make a bad decision to eat something you might later regret.

Forum Discussions

I do not have any ideas except to research other autoimmune disorders. Once you have one, you can develop more AI issues. Any possibility of drug side effects? For example the FDA has a black box warning in a class of antibiotics called fluoroquinilines (e.g. Cipro by Bayer). These can cause tendon issues.
Here is a list of autoimmune disorders. Not all are here, but it is a start.
https://www.aarda.org/diseaselist/
Ones associated with vertigo:
https://www.hindawi.c

And he needs to be super strict in his gluten free diet! SUPER strict, not just low gluten. No cross contamination, NONE.
I am so sorry, there are no short cuts with the testing. It flat out sucks but there you have it.
Welcome to the forum!